Challenges to Exploring the Patient Perspective in Palliative Care Conversations: A Qualitative Study Among Chronic Obstructive Pulmonary Disease and Chronic Heart Failure Patients and Their Health Care Professionals

Objectives: The aim of this study was to reveal the challenges faced in exploring the patient's perspective as experienced by patients with chronic obstructive pulmonary disease or chronic heart failure and their health care professionals (HCPs), including the circumstances under which these challenges are experienced during palliative care conversations. Methods: This is a qualitative, explorative study in the Netherlands using purposive sampling to create diversity in demographic variables of both patients and HCPs. Semistructured interviews with 12 patients and 7 HCPs were carried out with the use of topic lists. All interviews were audiorecorded, verbatim transcribed, and thematically analyzed. Results: Patients find it challenging to express their wishes, preferences, and boundaries and say what is really preoccupying them, especially when they do not feel a good connection with their HCP. HCPs find it challenging to get to know the patient and discuss the patient's perspective particularly when patients are not proactive, open or realistic, or unable to understand or recall information. Conclusions: Patients and HCPs seem to share the same aim: patients want to be known and understood and HCPs want to know and understand the patient as a unique individual. At the same time, they seem unable to personalize their conversations. To move beyond this impasse patients and HCPs need to take steps and be empowered to do so.


Introduction
5][6] However, early integration of PC is challenging when patients' perceive their disease as chronic rather than life limiting and when there is a misconception of PC as synonym for endof-life care.][9] The same disease characteristics lead to complex PC needs, which require a person-centered approach. 10,11erson-centered PC should be based on partnership, ensuring that patients are enabled to participate in care and that decisions are respectful of and responsive to their values, needs, and preferences. 12,13Health care professionals (HCPs) can enable patients to participate in care and facilitate optimal information exchange, including the exploration of the patient perspective, by the use of person-centered communication. 146][17][18][19][20] Patients with low health literacy, highly prevalent among patients with COPD and CHF, experience more barriers in expressing their perspective in conversations with HCPs. 18,25,26CPs find it challenging to establish a relationship, get to know the person behind the patient, get information about quality of life, and develop a holistic perspective.][23] Thus, the exploration of patients' perspective in PC conversations with HCPs depends on the ability and willingness of both patients and HCPs and requires participation of patients in these conversations.However, participation depends on the knowledge, skills, at-titude, and confidence of patients to participate in their care and on the relationship they have with their HCPs.Although patients can empower themselves the patient-provider relationship and person-centeredness can further enhance this process. 13he aim of this study is to reveal the challenges faced in exploring the patient's perspective as experienced by patients with COPD or CHF and their HCPs, including the circumstances under which these challenges are experienced during PC conversations.We need this knowledge to develop and implement a supportive toolbox for patients with COPD or CHF empowering them to express their personal perspective in PC conversations with HCPs.
To achieve this aim, this study focuses on the following questions: (1a) Which challenges are experienced by patients with COPD or CHF in expressing their personal perspective to HCPs? (1b) Under which circumstances are these challenges experienced by patients?(2a) Which challenges are experienced by HCPS in exploring the personal perspective of patients with COPD or CHF? (2b) Under which circumstances are these challenges experienced by HCPs?

Design
This study was part of a broader research and innovation project, called EMPATIE (EMpowerment of PATIEnts), covering two PC networks in the Eastern Netherlands.We started the project by exploring the challenges using two different research methods.First four co-creation sessions were held between October 2018 and February 2019. 27Second, semistructured face-to-face interviews with patients and HCPs were conducted between November 2018 and November 2019.This gave patients and HCPs unable or unwilling to participate in the cocreation sessions a voice in the project.This study presents the results of these semistructured interviews.

Patients
Patients were recruited by HCPs who had already agreed to participate in the EMPATIE-project, during scheduled consultations.Interested patients were contacted face to face by one of the researchers who provided additional information and answered questions.Patients filled in an informed consent form and a demographic information sheet after giving verbal consent.Patients were then called to make an appointment for the interview.Second, the coordinator of a regional patient support organization sent an e-mail to eligible patients in their network.Interested patients were called by one of the researchers and provided with more information.After giving verbal informed consent, an appointment was made and the informed consent form and demographic information sheet were completed before the interview.Patients were purposively recruited to create a variety in diagnosis, gender, marital status, age, education, and time since diagnosis.

Health care professionals
HCPs from hospitals, primary care practices, and homecare organizations were approached to participate in semistructured interviews.First, contact with HCPs was established through the coordinators of the two PC networks.Second, HCPs, who already agreed to participate in the EMPATIE-project, contributed to the recruitment of other HCPs within their personal network.Purposive sampling was used to create a variety in profession, setting, and years of experience.We planned to include at least one pulmonologist, one cardiologist, one advanced nurse practitioner (COPD), and one advanced nurse practitioner (CHF) working in a hospital, and one general practitioner (GP) and one practice nurse practitioner working in a primary care setting.

Data collection
The semistructured interviews were carried out by researchers M.U., L.G.v.d.V., and A.O.W.v.H.Two topic lists were developed based upon the experience of the researchers, one for patients and one for HCPs (see Table 1).Patients were interviewed at home and HCPs at work.

Data-analysis
All interviews were audiorecorded and transcribed verbatim.An inductive approach for developing themes was used.Transcripts were thematically analyzed by researcher A.O.W.v.H. using a six-phase process to familiarize the data and develop codes and themes. 28he transcripts of patients and HCPs were analyzed separately and systematically coded using ATLAS.ti9. 28 A.O.W.v.H. generated initial categories and themes from coded data.Initial codes, categories, and themes were further developed and reviewed through multiple individual discussions between A.O.W.-v.H. and researchers, M.U., J.J., and L.G.-v.d.V. Discussions between all participating researchers contributed to refining, defining, and naming of the themes.There was no threshold or limitation for including themes.

Ethics
The Clinical Research Involving Human Subjects Act was not applicable to this study as declared by the Clinical Ethics Committee, Twente.Good clinical practice guidelines were applied to the informed consent procedure of participants.

Participants
Twelve patients and seven HCPs, participated in this study.Four patient interviews, one with a COPD patient and three with CHF patients, were performed in the presence of one responsible informal caregiver.Five HCPs were working in a hospital setting and two in a primary care setting.Demographic information of patients is presented in Table 2 and of participating HCPs in Table 3. Interviews with patients had an average duration of 60 minutes and with HCPs 50 minutes.

Results patients
Patients reported different settings for their conversations with HCPs, such as during acute hospital admissions or long-term stays in a hospital, during medical tests or scheduled appointments in the outpatient clinic, and at home.Patients had positive and negative experiences of expressing their perspective during conversations with HCPs, which resulted in the formulation of two main challenges.
Challenge 1: Making my wishes, preferences, and boundaries known.This challenge relates to what patients value in their life, health, and care.The wishes relate to the desired improvement of physical functioning and abilities and the continuation of personal and social activities important to them.The preferences and boundaries relate to health care.Patients want to receive tailored care.They want to be heard in their experiential expertise, receive care according to their preferences, and receive clear explanations in layman's language.Patients also expressed two boundaries.They do not want HCPs to impose something on them and do not want contact on a personal level with every HCP (see Table 4).

Challenge 2:
To say what is really preoccupying me.Patients indicate that it can be hard to express the impact the disease has on their lives.They find it difficult to share what comes to mind when they think about their final stage of life.Although they want to know what to expect, they also have ambivalent feelings about it.They are aware of the relevance of talking about their wishes, thoughts, and concerns about future care, but find it hard to do so.Finally, they also experience difficulties in talking about negative experiences with HCPs regarding communication, decision making, or the provision of care (see Table 4).
These two challenges are encountered under two identified circumstances.
Circumstance 1: When I do not have a bond with my HCP.Reasons mentioned by patients are HCPs having limited time, discontinuity of HCPs, or limited contact moments in the care process.Several patients expressed frequent changes in HCPs.When patients receive their care in a hospital, their GP is often not involved.Patients may not feel a connection with their HCP because they do not experience a click or because the HCP acts aloof.Finally, not feeling equal to the HCP due to experiencing hierarchy or feeling patronized can contribute to patients not feeling they have established a relationship with their HCP (see Table 5).
Circumstance 2: When I cannot have a good conversation with my HCP.This situation occurs when a patient fails to have in-depth contact with a HCP, when they experience insufficient trust or willingness in conversations, when the patient does not provide or ask for information themselves.Patients would like to have eye contact and a bidirectional conversation.They also wish for deeper contact with their HCP and the ability to talk about other topics than just physical and medical issues.The fact that a patient does not share or ask for information can be due to the fact that the patient thinks there is no use in doing so.This factor plays a role when patients believe HCPs cannot say or do anything about their situation, when they think they are not worthy of asking attention for themselves or when they do not know what to say or ask when everything seems to go well (see Table 4).

Results HCPs
HCPs mainly talked about scheduled conversations in consultation rooms or the patient's home.HCPs talked less about conversations during hospital admissions, except the PC nurse.HCPs expressed several challenges to exploring the patient's perspective which, according to them, can lead to the delivery of suboptimal care.This resulted in the identification of the following two challenges.
Challenge 1: Getting to know the patient better.HCPs find it difficult to have in-depth contact with a patient because they cannot find a connection with them.Furthermore, HCPs find it difficult to explore what is going on in the mind of patients.It is difficult to get to the core and explore the readiness of patients to talk about end of life.HCPs find it challenging to discuss sensitive or nonmedical topics like emotions, sex-uality, concerns about independence, prognosis, or the future, when patients also find it difficult to talk about these subjects (see Table 6).
Challenge 2: Making the patient's perspective a topic of discussion.HCPs experience no space for integrating the personal perspective of patients due to lack of time, their own extensive agenda for the consultation, or because they speak a lot themselves.Another reason for this challenge is that HCPs find it difficult to talk about sensitive topics like sexuality, social isolation, prognosis, or end of life.They find it challenging when they do not know the patient or when they have negative experiences discussing these topics (see Table 6).These two challenges of HCPs are experienced under two identified circumstances.
Circumstance 1: When the patient does not behave the way I would expect.HCPs seem to hope for patients who are proactive, realistic, and open and find it difficult when they act otherwise.They gave examples about patients who arrived unprepared, do not take initiative, present their symptoms or problems insufficiently, do not want to hear or face the consequences of their disease or, are unable or unwilling to open up (see Table 7).  .''we have to quickly run through the medical-technical part, we first need to look at any heart complaints, then we need the blood pressure, listen to the lungs, see if there is any fluid in the legs, look at the ECG, view the blood results, look at data from the ICD or pacemaker, check medication and then we are more or less finished, but by then the time is often up.''Cardiologist, female, aged 61 I talk a lot myself ''Because doctors are terrible for talking and the patient hardly gets any time to say anything.''Cardiologist, female, aged 61 I find it difficult to talk openly about some subjects (fear, strain, life questions) or finding the right moment to broach them I do not know the patient well ''People don't talk about these subjects easily themselves, such as fear, strain, life questions.That's highly personal of course, not just something you casually mention.So, you often only ask someone about these things after you know them a bit better.''Advanced Nurse Practitioner COPD, female aged 51 I cannot find an opening to start talking about end of life ''..those are the conversations, yes, that are really difficult at times.After a hospital admission due to heart failure, they often perk up a lot and think ''I'm back again!''Then they are absolutely in no mood for that conversation.Finding the right moment to talk about it is always a big challenge.''Advanced Nurse Practitioner CHF, female, aged 38 I (no longer) dare to broach difficult subjects (prognosis, sexuality, lifestyle).
''In the sense that I think that I've sometimes made mistakes by deciding to say something and then they end up still going strong six months later.I think I've got that completely wrong a couple of times and so I wouldn't say that so quickly anymore.''Advanced Nurse Practitioner CHF, female, aged 38

Discussion and Conclusion Summary
This explorative qualitative study revealed challenges to exploring the patients' perspective experienced by patients with COPD or CHF and their HCPs, including the circumstances under which these challenges are experienced.Patients find it challenging to express their wishes, preferences, and boundaries relating to what they value in life, health, and care and saying what is really preoccupying them.HCPs find it challenging to get to know the patient well and discuss the patient's perspective.Patients experience these challenges when they do not feel a good connection or when they are unable to have a good conversation with their HCP.HCPs experience these challenges when patients are not proactive, open or realistic, or are unable to understand or recall information.

The impasse
0][31][32] Limited health literacy (LHL) can be an influencing factor as well. 26,33,34Both patients and HCPs find it hard to initiate these discussions and prefer the other to take the initiative. 32,35,36This may result in HCPs keeping their focus on physical and medical aspects of care instead of quality of life and preparing for the end of life. 31,35,37,38ronically, patients and HCPs seem to share the same aim: patients want to be known and understood and HCPs want to know and understand the patient as unique individual.Patients find it difficult to be seen, heard, and understood as unique individuals.HCPs find it hard to make a connection and explore the unique perspective of individual patients.Despite the congruent preferences they do not easily succeed to personalize their conversations.The implication is that the patient's perspective is not explored and expressed in PC conversations.This impacts the HCP's understanding of the patient as a person and the development of a therapeutic relationship.The provision of person-centered PC then becomes more difficult or even impossible.
It is important to break out of this impasse.[24]39,40 It is possible that HCPs have learned or are triggered by the system to use a certain format and style for conversations with patients. 23,40,41nder these circumstances it is challenging for patients to make themselves known as a unique individual.Patients are not used to preparing for conversations, are sometimes unable or unwilling to talk about certain subjects, or are unable to understand or recall information. 15,16,18,20,36,37,42,43Under these circumstances it is challenging for HCPs to get to know the person behind the patient and provide tailored care.
Although patients and HCPs mentioned circumstances relating to their own competencies and attitudes, they both tended to focus on the other in explaining why they experience these challenges. 17,31,32,35,36,38,44However, moving beyond this impasse requires different behavior of both patients and HCPs.Patients need to prepare for, and actively participate in conversations.However, such a role is not obvious to all patients 44 and patients need a certain level of empowerment to be capable to engage in their health care. 13HCPs need to be aware that LHL influences patient empowerment, participation, and effectiveness of communication. 13,21,34,37,435][46] This seems especially challenging for medical specialists probably due to the limited time and their perceived role and responsibility. 20,21rengths and limitations A strength of this study is that it simultaneously studied challenges and circumstances of both patients and HCPs, which made it possible to discover the impasse.Another strong point is that the themes were refined, defined, and named through multiple discussions with the participating researchers.
In four interviews three male partners and one adult daughter were present during data collection.Although we did not include their expressions in our analysis, their presence could have influenced patient disclosures.

Conclusion
This study provides the insight that patients and HCPs seem to strive for the same thing: patients want to be known and understood and HCPs want to know and understand the patient as unique individual.At the same time, they seem unable to personalize conversations.Although patients and HCPs mentioned factors relating to themselves, they mainly tended to focus on the behavior of the other.Breaking this impasse requires both patients and professionals to take steps and both need to be empowered to do so.This could be realized with the use of (inter-) national evidencebased conversation tools for both patients and HCPs.

Practical implications and research recommendations
Although the EMPATIE-project is focusing on the empowerment of patients, this study revealed that both patients and HCPs need to become aware of the relevance of integrating the patient's perspective into PC conversations.They both need to be empowered to change their behavior.It is important to study their behavior in more depth in a more diverse population during PC conversations.Also, further study is required to integrate the patient's perspective into PC conversations, including the required implementation strategies.curation, formal analysis, investigation, and resources.J.J., J.H., and K.V.: writing original draft, review, and editing.M.U.: conceptualization, formal analysis, funding acquisition, investigation, methodology, and resources.

Funding Information
The study is part of a three-year research project named EMPATIE (EMpowerment of PATIEnts with COPD or CHF and their informal caregivers) with project number 844001501 subsidized by the Dutch Organization for Health Research and Development (ZonMw).

Table 1 .
Topic Lists Patients and Health Care Professionals

Table 2 .
Demographic Information of Participating Patients a Level of education High = college or university, Medium = secondary school, Low = vocational training.CHF, chronic heart failure; COPD, chronic obstructive pulmonary disease.

Table 4 .
Challenges Experienced by Patients ''At the hospital in [place] you ended up in a room on your own and they closed the door at night and I felt like I was in a prison and when the door was open then it was so busy in the corridor and uh, (sigh) there you were then.I sat waiting until the next day came.I thought it was terrible there.''Female, aged 74, widow, CHF I want a clear explanation in normal language ''I find the cardiologist quite accessible but they use loads more difficult words.It's easier to talk to the nurse.''Male, aged 49, married, CHF I do not want my HCP to impose something on me ''I have been able to put it [heart rehabilitation] off for three years, but they keep nagging on about it.''Male, aged 80, living together, COPD and CHF I do not feel the need for contact with a HCP on a personal level ''Everything I want to say, I can say to the nurses, to a couple of them anyway, not all of them.The younger ones are no good to me.But definitely with the pulmonary nurse and the oldest carer.They know me inside out.I don't need more than that.''Female, aged don't want to leave the children and I still want to do so much [gets emotional].But I just can't manage it.''Female, aged 69, married, COPD What thoughts and worries I have ''Well, I wake up and I'm a burden to him [her husband].''Female, aged 69, married, COPD

Table 4 .
(Continued) ''We went to the doctor's and she said that everything was good.The heart film is good, blood is good, blood pressure is good, everything is good.And I said but I don't feel good.''Female, aged 88, married, CHF Olde Wolsink-van Harlingen, et al.; Palliative Medicine Reports 2024, 5.1 http://online.liebertpub.com/doi/10.1089/pmr.2023.0071Circumstance 2: When the patient does not understand the conversation or information.HCPs also find it difficult when they experience patients' inability to understand the conversation or information.This can be caused by limited cognitive and communication capaci-ties or recall problems due to low health-literacy, high age, or disease severity.It can also be caused by insufficient knowledge and insight in the disease and treatment or because patients have their own assumptions and beliefs about medical tests and interventions (see Table 7).

Table 5 .
Circumstances Under Which Challenges Are Encountered by Patients Wolsink-van Harlingen, et al.; Palliative Medicine Reports 2024, 5.1 http://online.liebertpub.com/doi/10.1089/pmr.2023.0071 ''They [two nurses] had a whole story about all that needed to be done.And, you know what?And he [her husband] says: ''I can still see your face; completely speechless you were.''As if I was some kind of stupid old person.I really felt that strongly then, that I was being treated as inferior.

Table 6 .
Challenges Experienced by Health Care Professionals Because the course of the disease can be so different and is so difficult to predict.When is the right time to have the [bad news] conversation, that is really difficult?Sometimes we think now's a good moment, but then the patient turns out not to be ready for it.''